A Parent’s Worst Fear: When Down Syndrome Leads to Alzheimer’s

Sometimes days go by and even weeks when I do not think about it.

However, it was a Sunday, an ordinary day, when I was forced to think about it. Dorothy called me. I knew Dorothy from a previous position I held in the disability world. She and her husband are devoted parents to Cheryl, who has Down syndrome. Dorothy and her husband forged a path of inclusion for Cheryl that allowed many of us to follow. Defying the conventional wisdom of the day, without Federal or state laws as protection, Cheryl was included in all aspects of life. She now lives independently and until recently, was competitively employed.

Immediately, I knew why Dorothy was calling. Call it a sixth sense or just call it knowledge. Cheryl had been diagnosed with the beginning of Alzheimer’s, an almost inevitable diagnosis for adults with Down syndrome.

Advances in medicine have extended the life span of persons with Down syndrome and also the real possibility of Alzheimer’s. There is an indisputable link between Down syndrome and Alzheimer’s. Anybody with Down syndrome, if they live long enough, will eventually develop this disease.

That afternoon, I found myself listening to this mother, herself in her 80’s, trying to make decisions to help Cheryl on this next part of her life’s journey. Her struggle was how to continue to support Cheryl to live independently and make sure she was safe and receiving the health supports she now needs. It was the same kind of decision many children have to face with their elderly parents: do we unplug the stove, when do we alarm the doors, how do we tell someone who is proud and independent that they can no longer live by themselves? How do you do this to a person who has fought society’s low expectations for over a half century?

Jon and me

You do it with grace. And with my thanks for showing me how I might do it. My son is 32 and he has Down syndrome and this is the future that awaits him.

Unless we find a cure.

-- Jo Ann Simons

Originally published on the Ruderman Family Foundation blog.

Disabilities Discrimination: Against the Law But All Too Real

Another of my blogs which was originally published on the Ruderman Family Foundation's website:

I recently attended a breakfast where Congressman Stephen Lynch of Massachusetts was the speaker. He shared with us that he had been to Iraq many times in the past few years and on this occasion was meeting with various government ministers. At one point, one of the ministers said to him, “Excuse me, Congressman. I feel betrayed by the United States government. You never told us how hard democracy is.”


While the Iraqi people are learning how hard democracy is, we are willing to invest our money and the lives of our sons and daughter into a cause which we believe is just and right. It is also absolutely necessary for our civilization to progress.

I would like to suggest that the same can be said for the inclusion of persons with disabilities. While the Americans with Disabilities Act and other legislation makes it unlawful to discriminate against persons with disabilities, discrimination exists every time a person with a disability in excluded from loving, learning, working or playing.

Democracy-loving people, wherever it the world they live, should be demanding a society where every member is valued and has equal access to its opportunities. Inclusion is hard work but lives do not have to be sacrificed to create a just world.

Our civilization depends on it.

Our Values

Another blog of mine from the Ruderman Family Foundation blog

By Jo Ann Simons, Ruderman Family Foundation Disabilities Advisor and CEO Cardinal Cushing Centers

Hardly noticed until Time Magazine reported on it recently, is the availability, for expectant mothers to learn with almost 100% certainty and accuracy whether their unborn child will have Down syndrome. The simple blood test is performed at 10 weeks of pregnancy and checks for the presence of markers for the extra chromosomal material that causes Down syndrome. Expectant mothers have already been given this simple blood test and the test has been administered without one essential aspect: accurate information about the joys and challenges of having a child with Down syndrome.

In a society that values perfection, these tests have been developed and are presently offered with a built-in bias against people with disabilities. For now, the test identifies Down syndrome, a genetic condition with which I have much experience. It will not be too long when the same simple blood test will be able to screen for other conditions like Alzheimer’s, breast cancer and schizophrenia. Can you imagine if we were robbed of the contributions that people with these conditions have made?

We already have too much experience with the horrific outcomes when humans think they can decide who is worthy of life. We should all be very worried that this test will surely lead to the rapid decline in the number of people with Down syndrome and then we will take this knowledge and apply it to other conditions. While it may not be as easy to point to people with Down syndrome and their contributions to our society, I can tell you about the contributions of my son, Jonathan, to my world and to the world of every single person he encounters. He breaks stereotypes and long-held beliefs about people with disabilities and, in doing so, he has single-handedly made the world a better place.

When he volunteers at the Boys and Girls Club, Jonathan becomes a contributor. When he files his taxes, Jonathan becomes responsible. When he accompanied his confirmation class to the Holocaust Museum and announced to the assembled group of typical students and religious school teachers that the Nazi’s “killed kids like me,” Jonathan became the teacher.

Some people may say that he suffers from having Down syndrome and some of the medical conditions that accompany it. I can tell you this — Jonathan does suffer. This year he suffered as he watched his beloved Red Sox crumble in September and crush his hopes for a post season and he still suffering from the New England Patriots Super Bowl loss. Just like millions of other fans, he is just now beginning to be able to talk about it.

On any day, however, he will tell you that he loves his life. Is there any other reason to be?

– Jo Ann Simons

Turning 21: Bittersweet Birthday for Young Adults with Disabilities

I occassionally blog for the Ruderman Family Foundation and this is my latest  blog:

In a recent Boston Globe column, (January 29), Joan Vennochi brought us the story of James Nadworny, a young man with Down syndrome, who recently celebrated his 21st birthday. While it was undoubtedly a wonderful occasion, it would bring him and his devoted family closer to the day when he turns 22, a milestone, to paraphrase Don McLean, when “the music died.”


In Massachusetts and in most states, people with disabilities and their families have been “happy for a while.” People like James and my son, Jon, through the age of 22, are guaranteed an education but, unlike the majority of special education students, who will go on to college or careers, our children need additional supports to achieve the dreams and hopes we have for them.

“Bad news is on the doorsteps” because our children are entitled to nothing after their education ends. Continuation of support depends entirely on the state budget process. The support that individuals with significant disabilities need to be successful is not adequately funded and the funding gets tougher every year.

I know. I have been advocating on behalf of persons with disabilities for over 30 years. I know our State House too well and I get tired of begging for a society to see the worth of our children and adequately fund the services they need and to pay the dedicated staff who work with them a living wage.

My son was lucky. He is 32 and when he turned 22, the economy was stronger and the political will to provide him the supports he needed was stronger. As a result, he received the support he needed to work and live independently.

James is turning 22 in the worst possible economic time and the hopes of his family, for him to live a full, productive and meaningful life, should be the hope all of us has for James.

VERC Enterprises Shows Us the way

 

 

Over 20% of VERC Enterprises workforce are people with intellectual disabilities and according to CEO Leo Vercollone (pictured here with me and one of his employees at a recent recognition event at Cardinal Cushing Centers) and it has kept his 24 convenience stores/gas station and car washes ahead of the competition. In an industry with 100% turnover, his company has a 40% rate. The difference are... people with intellectual disabilities. He spoke of a culture created at his company through hiring individuals with intellectual disabilities. In the face of stiff competition, he wanted to create a store culture that is happy, fun, inclusive and caring. The key to creating that culture is the over 20% of his workforce who have intellectual disabilities. His employees say work is more fun. His customers find the practice socially responsible and he he describes these employees as committed and hardworking. Three cheers for VERC!!!

How do we get the word out that people with intellectual disabilities are an asset in the workplace??

Vercollone is keynote speaker at Cushing Centers breakfast

Vercollone is keynote speaker at Cushing Centers breakfast

Cushing Centers volunteers a real plus at Hanover COA

Cushing Centers volunteers a real plus at Hanover COA